July 27, 2006

I'd noticed I was using a lot more insulin but figured it was because I'd cut down on my metformin. But when I went back up to 1 750 mg tablet a day of the Metformin I didn't see much improvement and my fasting bgs were creeping up again, so I started to wonder if my two month old vial of R was getting weak.

I'd been keeping the vial at room temperature after reading various places that it would keep at room temperature for many months and had used about half the vial. But my room has been quite warm of late, even with our feeble window air conditioner cranking at full blast down the hall, so it seemed like a good idea to buy a new vial.

Yesterday I'd stayed well over 110 mg/dl for hours after using 2 units of the old stuff on a conservatively estimated 16 grams at lunch (1 slice of "lite" rye bread with a reasonable serving of natural peanut butter), I tried 2 units of the new stuff today with the identical lunch.

Wham! I peaked at 99 an hour after eating and then went right back into the 80s, which "forced" me to eat half of a delicious peach for a snack 2 hours later to avoid hypoing. Five hours later I'm at a perfect 81!

So that answers that question of whether it's me or the insulin.

I'll be keeping the R in the fridge this time and testing with this reference meal from time to time to make sure it is still fine.

But at least I can be reassured that using insulin for a while hasn't somehow increased my need for insulin which had been a concern.

July 26, 2006

You see these studies all the time that tell you cheery "facts" such as that diabetics are more likely to get heart attacks, Alzheimers, and have poor healing after wounds or surgery. Depressing, isn't it?

What they don't tell you is that the "diabetics" they are talking about are really "Diabetics with lousy blood sugar control". The diabetics in the studies that lead to these conclusions universally have A1cs of at least 7% and often more like 10% along with fasting blood sugars near 200 mg/dl (11 mmol/l).

Doctors all too frequently tell people with Type 2 diabetes that an A1c of 7% is "fine" and don't point out that an A1c that high almost guarantees neuropathy and early changes in the retina and kidneys leading, eventually, to disaster.

The 7% A1c target was originally established after the DCCT study found that people with Type 1 diabetes who achieved that A1c had far fewer complications than those whose A1cs were higher. (No study ever looked at what happened to complications if the A1cs were LOWER than 7%). But when they ran a similar study of Type 2s, the UKPDS, while they found that the 7% A1c resulted in fewer complications than higher ones, they also found that people with type 2 diabetes at the 7% A1c got far MORE complications than Type 1s had who had that same A1c. In short, an awful lot of people with Type 2 diabetes followed in the UKPDS study who kept their A1cs at 7% ended up with serious complications including retinopathy (med-speak for blindness).

The conclusion that should have been drawn from this is that people with Type 2 diabetes need to shoot for much lower A1cs than those with Type 1. Unfortunately, that isn't what happened. Most doctors still tell patients that 7% is a good A1c target that prevents complications and labs flag anything under 7% as "good control."It isn't. Good control is control that gets you as close to normal numbers as is possible.

What is normal? There's some evidence that true normal is an A1c of 4.7%, a fasting of 83 mg/dl (4.6 mmol/L) and post-meal readings no higher than 120 mg/dl (6.7 mmol/l) within 2 hours of a meal. That's a tough target to meet and one that a lot of us can't reach. But the closer you can get to these numbers, the better off you will be.

Most people with Type 2 diabetes CAN get their A1cs into the 5% range with a combination of cutting way back on carbohydrates, taking insulin resistance drugs like Metformin, and if things are really out of control, insulin.

So when you see yet another study that tells you that because you have diabetes you are doomed to yet another nasty life-shortening condition, remind yourself it isn't some underlying condition causing these problems, it is high blood sugars, day after day, meal after meal. If you can bring your blood sugars down to normal, your risk for these conditions will drop to normal too!

In brief, the study concludes that there is no reason for people with type 2 to use bolus insulin as the results of using a basal alone is comparable to a bolus/basal regime.

Why is this so dangerous? Because of the way the study was designed. What it really proved is that patients who don't use enough bolus insulin to control blood sugars will get little improvement from using bolus insulin. That's because the post-meal target in this study was 180 mg/dl, a level guaranteed to promote neuropathy in everyone and retinopathy in a lot of people with type 2. (Details of why can be found at Research Connecting Organ Damage with Blood Sugar Level)

This is, of course, the level the ADA has been pushing for years. One that the American College of Clinical Endocrinologists (AACE) has abandonned, because it is far too high.

Not only that, but the patients in this study were taken off ALL oral drugs, which of course meant that their insulin resistance went WAY up, making control that much harder.

The tragic thing is that insurers are likely to seize on this as a reason to deny coverage for bolus insulin to people with Type 2 diabetes.

Why doesn't ANYONE in the medical establishment get it that people with Type 2 deserve treatment that gives them NORMAL blood sugars, not those that ensure that most of them will suffer horribly for years?

July 18, 2006

I've been having a problem with mild nausea for several weeks, so I figured I better cut back on the metformin before going to the doctor and getting put through the whole misery of having tubes stuffed up various orifices, just to make sure the nauseous isn't a side effect of the Met.

I hadn't had a problem with metformin causing stomach problems in the past, but the endo told me last week she had another patient who developed the same problem after a couple years on metformin, had the expensive work up, and then found out the problem WAS from the drug.

So this is day 3 with no metformin, and boy am I hating it.

All my nice insulin dosages are now off because the Metformin drops me at least 20 mg/dl. So instead of being in the 80s this morning after my very low carb breakfast-- 4 grams--I was in the 100-110 range instead, and stayed there until my lunch injection. At dinner I saw a nasty spike though I'd done a bit more than usual hoping to cover it. And since it takes a few weeks for metformin to washout of the body, it's going to keep getting worse as time goes on.

Naturally, this would be he day that The World's Nicest Man brought me home an eclair from the Black Sheep Deli in Amherst, which is something I only get once every couple blue moons. It is almost my birthday and this is a pastry worth shortening your life for. I haven't had one for months and they don't keep, so I'd dosed the insulin with it in mind. But with that spike 90 minutes after dinner, no eclair for me, at least not until I'm back at a reasonable level.

Guess I better go see the doc and hope it's a treatable ulcer, though treating an ulcer when you can't take salicylates may be interesting, too. That said, the tummy is a lot happier without the metformin. Damn!

July 15, 2006

Apologies to those of you who posted comments that never appeared. I didn't realize I had to approve each one. They're visible now.

A few thoughts in response to the comments.

1. Re A1c: I controlled with diet for many years before starting insulin. I did not find the A1c a good guide at all, because my diabetes was characterized by very high post-meal readings, but near normal fasting values. As a result, my A1cs were often only slightly elevated while my blood sugar, for many hours a day, was high enough to do significant damage. This, it turns out is a common pattern among women who die of heart attacks. I've got some pointers to the Rancho Bernardo study that discovered this pattern on the "What they Don't Tell You About Diabetes" site.

It's also significant that two studies of neuropathy in people with non-diabetic blood sugars found no correlation between incidence of neuropathy and A1c, but a clear relationship between 2 hour glucose tolerance test result and neuropathy. So here too, post-prandial levels are much more indicative of early damage than A1c. All this is documented at the "At what blood sugar level does organ damage occur" page on the phlaunt.com site.

Finally, just this week, Diabetes in Control reported that the ADA is now saying that an A1c of 5.8% indicates a possibility of diabetes and should be screened. My endo told me that in her experience 5.7% is almost always diabetic! But most family doctors won't even mention diabetes until you are nearing 7%!

2. Byetta: I have heard very good things about Byetta, most notably from someone with a very similar kind of diabetes to what I have who is getting excellent results. However, I have a long history of getting bad side effects, some permanent, with common drugs, so I felt it would be smart to wait until there was more data available on Byetta use, long term. Since my current regimen is working very well, there's no hurry.

3. What if Exubera turns out not to harm lungs. Is it great then? No. Not unless they can come up with a dosing mechanism that allows finer titration. As I told the Business Week editor, I often dial in my dose to 1/2 a unit. An bolus insulin delivery system that has 3 units as the smallest increment is going to be useless for anyone who is insulin sensitive. Beyond that, since 2 mg isn't the same effective dose as 2 times 1 mg, according to what I've read, even an IR type 2 is going to have trouble figuring out how to match this stuff to meals.

There's a buccal insulin in the pipeline (absorbed via the cheek membrane) that would not have the lung issues and might be more easily dosed. That could be helpful. But we'll have to see what it really does. I don't trust any of the PR you read before the drug company has to put together something that has legal standing. And even there, I've read enough Prescribing Information to see the statistical tricks they pull to make their product look more effective than it is!

July 14, 2006

It all comes down to time. I have it, my busy endocrinologist does not.

So I read weekly newsletters like "Diabetes in Control", I scan health news posted in online edition of the NYtimes and on the Google News site every day, and when I see something about a new diabetes treatment or drug, I check the newsgroups and bulletin boards to see what people who are using the drug have to say.

That's why I'd noticed, months before my endocrinologist did, that the people reporting the biggest weight loss successes with Byetta were those who had been having problems controlling their eating (a problem I don't have.)

When she suggested that I try Byetta 6 months ago, I'd pointed out that I don't eat very much and certainly didn't want to lose weight and that the people who were happiest with Byetta were those who were eating a lot less now that they were taking the drug. Just yesterday at my appointment, when I asked the endo how her patients were doing on Byetta, she said, "I'm finding it's working best for the people who had problems with overeating."

When Levemir came out in the U.S., I looked to see what people in the U.K. who had been using it for years had to say. I also read the prescribing information very carefully. As a result I knew that it was not the 24 hour basal that the manufacturers would like you to believe it is. And, for that matter, that neither is Lantus for people taking type 1 rather than type 2 sized doses!

When I was looking to improve my control last year and checked out Avandia, I read the prescribing information, and then posted online asking people about their experiences with it. I got an earful! Dozens of people reported that it had caused edema and weight gain. I read an article online about an eye doctor who gave a speech at a conference linking Avandia to macular edema almost a YEAR before that news finally made it to mainstream medical news organs. I gave it a try, but when I swelled up like a tic and started having daily headaches, I ditched it immediately, though my family doctor who had prescribed it insisted that his other patients who took it had no problem with edema!

Most recently, when I was looking at Amaryl I checked out the whole story behind the increased incidence of heart attacks in people taking sulonylurea drugs. This is cited in a bold print warning in the Amaryl prescribing information. When I mentioned this to my endocrinologist, she told me she was not aware that there was a link between sulfonylureas and increased heart attacks nor did she know about the warning in the Amaryl prescribing information.

These are just a few examples of how the educated patient, who has the time to study up on their condition may be way ahead of the busy doctor whose continuing education consists of occasional drug-company sponsored junkets.

Fortunately, I'm not alone in doing this. Scan alt.support.diabetes via Google Groups, or read http://www.diabetes-book.com/cgi-bin/yabb2/YaBB.pl and you'll find lots of other people with diabetes doing the same thing. That's because with diabetes, the consequences of settling for average care instead of the right care can be early death, lost limbs, dead kidneys, and blindness.

If busy professionals would have more respect for the experience and knowledge of educated patients, the rest of their patients would probably be better off!

July 12, 2006

The "study of the day" reported by Diabtes in Control involved two groups of people with "mild" type 2 diabetes. One group exercised, the other exercised and took a drug, Acarbose, which is sold in the U.S. as Precose.

What it found was this: while exercise reduced insulin resistance in the group using exercise alone, as measured by various laboratory techniques, it made no difference in blood sugar control as measured by the A1c. Adding Acarbose improved both IR and blood sugar control.

Lost in the way the article is presented is the more important message here: that the usual advice to exercise your way out of diabetes is not going to do much for you unless you cut way down on your carb intake. I took Acarbose for years and as long as I had some second phase insulin response left, it pretty much acted like cutting 15 grams of carb out of a meal. Unfortunately, as my second phase weakened, Acarbose started to simply postpone the blood sugar spike, not eliminate it. This sounds great, but it's main side effect which is socially catastrophic gas for anyone who eats anything near a "normal" amount of carbs, make it unlikely to ever gain much public acceptance.

But getting back to the study: Since 99.5% of doctors will tell anyone with diabetes that if they only exercised more they'd get better control, this is an extremely important finding. Reducing your Insulin Resistance in a way that makes lab instruments happy but doesn't lower A1c is not going to do much for your health.

My feeling has long been that exercise is oversold as a diabetes remedy. My blood sugar deteriorated significantly during the year when I went to the gym almost every day. I ended up with pretty muscles, lousy blood sugar and repetitive stress injury in my feet from the treadmill which eventually made it harder to do any exercise at all.

There certainly are reasons to do exercise--improving strength, endurance, and cardiac capacity--but exercise is not the miracle cure for diabetes people think it is. Studies also show it doesn't do much for obesity unless it accompanies a rigid, long-term diet.

July 11, 2006

It would have been nice if the journalist had identified me correctly as the author of the "What they Don't Tell You about Diabetes" web site and a long-term poster on alt.support.diabetes, not as "a blogger".

I've got an 8 year long record of posting about diabetes-related topics online, and my web site (based on a ridiculous numbers of hours of combing through medical research papers) comes out very high on a lot of Google searches for diabetes-related topics. But like most journalists, she probably things blogs are "in" and web sites and newsgroups are "so old fashioned."

Unfortunately, the net result of the way she presented what I told her is that the reader, quite reasonably says, "Who cares what she thinks." I'd say the same thing myself.

The whole episode is pretty silly. I started the blog about two weeks ago just as an experiment after putting out hundreds of thousands of words on alt.support.diabetes over the years and immediately I end up, complete with awful photograph, in Business Week. This is not really a thrill, since the whole point of talking with the magazine writer was to see if maybe an important point could be gotten across.

Sadly, not a single substantive thing I had to say made it into the article. Too bad she didn't at least quote me as saying that shooting insulin is painless and that an ad campaign that stresses the awfulness of insulin injections will only make life harder for people with Type 2 diabetes who are unnecessarily scared of something that is No Big Deal.

July 10, 2006

The article I mentioned below came out today, in Bu---- W--k Online Magazine and in it yours truly is the Poster Child for "people who don't want to use Exubera." Unfortunately, the interviewer didn't go so far as to actually quote what I'd said in email and a subsequent phone interview. She just boiled it down to a very generic summary, that I'd said it was hard to use and could cause lung damage.

What I'd actually told her , for anyone who cares, is that it sounded like it would be impossible to match it to meals, which is a problem with a bolus insulin. That's because the smallest dose is equivalent to 3 units (probably of Humalog) which is already too much for me , and the concentration does not, apparently, go up in a straight line fashion, so double the starting dose does not give you twice as many unit equivalents.

There's some energetic comment on the magazine's web site, quite a bit of it from employees of the company, shocked and horrified that patients aren't grateful to be spared the horror of injections.

On the plus side, the doctors quoted in the article seem (for once!) to agree with me that this is not a drug they want to give their patients.

But Pfizer is going to spend $50 million dollars a year advertising Exubera directly to customers. Prepare for the worst. If you aren't scared of needles now, you will by the time they're done with you. I wonder if Stephen King is writing their ads.

July 5, 2006

Lately I've learned that there is one gene that appears to cause both MODY-1 and a kind of Type 2 diabetes. What's important about it, is that when it's broken, it mostly affects post-meal insulin secretion, not your fasting blood sugar. That means if your defect lies in this gene, you're going to have the kind of diabetes that is tougher to diagnose because most doctors just do a fasting test.

Eventually people with this particular kind of diabetes do become fully diabetic, because the elevated postprandial blood sugars will destroy beta cells over time. But, if I am reading the research reports correctly, with this kind of diabetes you are more likely to end up with the cardiovascular complications (i.e. heart attack) which come at lower A1cs, rather than the classic, high A1c, complications of retinopathy and kidney failure.

This might sound great, except that often the first symptom that you have developed a cardiovascular diabetic complication is a fatal heart attack. It's little consolation to know that you're going to die in your 60s with no retinopathy!

The gene is HNF4-a. I originally noticed it because it both the MODY-1 gene AND it several studies have found problems with it occur with some frequency in Jewish Type 2s. It is also found frequently in Finnish type 2s and in several other ethnic groups.

The HNF4-a gene secretes a protein that switches on other genes in the pancreas and liver, and among those genes it affects are those that cause insulin secretion in response to a glucose load and those that produce aldehyde dehydrogenase, the enzyme which breaks down alcohol, and which, if you don't have it, gives you "Asian flush". It also affects prothrombin which helps your blood coagulate, and some of the genes that affect lipid production.

There are dozens of different genetic errors which can affect HNF4-a. How your diabetes will behave depends on what exactly is broken.

This is fascinating stuff and still not much reported on. It is not possible to get screening for this gene outside of studies right now, unless you have severe symptoms of MODY-1.

Just remember that the typical pattern for this kind of diabetes is that for years your post-meal blood sugars will be high--over 200 mg/dl when you eat a meal containing a normal amount of carbohydrate, while your fasting blood sugar and A1c test may be normal or only mildly elevated. If you are Jewish and suspect you might be diabetic. Make sure your doctor tests your post-meal blood sugars, not just the fasting blood sugar or you might be falsely assured you are "just fine" when you aren't.

July 3, 2006

Leaving no stone unturned, I decided to try a very small dose of Amaryl after seeing posted on the Exeter MODY site what the correct dose would be for someone with the kind of MODY I've been guessing I have. (1/4 of the normal starting dose.)

My doctor had been wanting me to try it, and after assuring myself that Amaryl is, in fact, one of the sulfs that doesn't affect the receptors on the heart (since some sulfs cause the two and a half times more heart attacks in sulf-takers), I gave it a shot.

Being ultra conservative, I started with 1/8 of the starting dose, which involved complex manipulations with a pill cutter. Turns out you can turn 1/4 into 1/8 by turning the pill on edge. (Dr. Bernstein's warning about sulfs burning out beta cells seemed not to be a huge concern with a dose that was 1/64th of what most Type 2s take.)

It was an interesting and productive experiment. The Amaryl most definitely got me secreting insulin, and that insulin worked. That validated that I do seem to have the MODY I think I do, as an extremely strong response to tiny doses of Sulfs is a characteristic. It also answered the question of whether something is wrong with my own insulin molecule with a rousing "No!" (This makes it more confusing that my C-peptide was normal when my bg was over 200!)

That said, I'm not likely to take this stuff again, even though it worked scarily well.

I had stopped taking metformin for a couple days because the version the pharmacy gave me this month, from a different manufacturer, was making me nauseous all the time. Without metformin in my system, my bgs after eating had risen another 20 mg/dl. So to test the 1/8 mg of Amaryl, I ate a meal that contained the same amount of carbs--40 grams--that, the previous day, when eaten with 3.25 units of R was putting me in the 110s (6.1 mmol/l) after 2 hours. The 1/8 mg of Amaryl dropped me to 86 mg/dl (4.8 mmol/l) at 90 minutes!

This sounds good, but there was one deal-killing side effect. From the an hour after I took the Amaryl at 8 AM until I went to bed at 10 PM I was ravenously hungry--Eat everything you see and then eat more hungry. Shovel food into your mouth like a crazed lunatic hungry. The kind of hungry I was in the months before I got diagnosed with diabetes.

When I woke up this morning with a fasting bg of 111 and NOT hungry, I heaved a deep sigh of relief that the drug was clearly out of my system. It wasn't clear how long it lasted from the prescribing information, and I wasn't looking forward to another day like yesterday!

I'd read that sulfonylurea drugs packed weight on people. Now it is clear why! Intellectually I might like the much better control it could give me, but I could not live with that kind of hunger. Plus, I would have to live on starch and sugar to avoid hypoing and I also could not take this stuff with metformin, given that I was plummeting to the 80s after eating boatloads of carbohydrate at each meal. Metformin does such good things to my lipids and maintains my weight perfectly, so I don't want to give it up.

My total intake yesterday got up to 150 grams of carbs because otherwise I was sure I was going to hypo. At one point, I hit 190 mg/dl at 45 minutes and then dropped back very quickly to 100 and then back to the 80s at 2 hours.) Since Met drops me another 20 mg/dl I could easily end up in the 60s. A lot. I don't think I could get the pill splitter to do 1/16!

So back to the Regular insulin I go. No hunger, no ugly spike when I time it right, though not a lot of time spent in the 80s, either. But 90s works for me and I can achieve that consistently. It's a lot better than 120-140. Most importantly, if I'm not eating carbs, I just cut back or omit the insulin entirely (as I usually do for breakfast) and that's that.

July 1, 2006

Someone posted on the newsgroup that they were a journalist looking for people's opinions about Exubera. I figured, hey, maybe it is for real, so I answered briefly, mentioning the obvious problems with inhaled insulin.

It turned out to be real, and next thing you know, they want to quote me and a photographer from a Major Magazine is scheduled to come out to my house to take my picture.

Giving it some thought, I realized, what I'd really like to do would be to have them shoot a picture of me doing the classic insulin tummy jab to demonstrate just how simple and painless it is to inject insulin. Given the terror most type 2s bring to the thought of having to inject, one picture of a smiling happy person sticking a syringe into their tummy could do a world of good. Heck, I'd be happy to go on network TV and demonstrate the painless jab.

Of course, I'll be very surprised if the photographer goes for that shot. Needles still make most people think of drug addiction. Still, it might be very necessary, very soon. When a company is about to put a bundle of money into promoting a new insulin product that costs a ton more than even the most expensive analog, without being able to deliver the precision doses that make insulin makes sense, their main marketing thrust has got to be playing on the normal person's terror of needles.

Can't you just see the ad campaign? Close up of a 2 inch spike, faces contorted in pain, horror movie music--then the voice over--free yourself from the torture of injection (well, at least for meals, you still have to shoot your basal if you're like most people on insulin.)

If they're going to be like that I will be happy to bare my pretty reasonable 58 year old tummy in front of an audience of millions and demonstrate how utterly unnecessary inhalable insulin is. Heck, I wish I'd known a couple years ago because I'm so much happier on insulin than on the old "you can't eat anything that tastes good ever again" dietary regimen.

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I was diagnosed with diabetes in 1998. Since then I've kept my A1cs in the 5.0-6.0% range using the techniques you'll find explained at The main Blood Sugar 101 Web Site, where you'll also find extensive discussion of the peer-reviewed research that backs up the statements you read here.

I've also published two books on related subjects, Blood Sugar 101: What They Don't Tell You About Diabetes, which was an Amazon Diabetes bestseller for 3 years and Diet 101: The Truth About Low Carb Diets.